Friends for Life

The dinner bell rings at 5:30 on a perfect summer day, calling campers of all ages from across the University of Rhode Island’s W. Alton Jones campus in West Greenwich to its rustic main lodge. Kids and counselors grab seats at the long wooden tables, under the gazes of the faux animal “trophies” that adorn the wood-paneled walls and stone fireplace mantle: an ibex head, a skunk family, a red-tail hawk. The din of talking, laughing, utensils clattering on plates is instantaneous and deafening.

The order he’s seeing in the swirl of 90 hungry, energetic kids is the charts, pencils, and calculators they pick up before they eat. Fox is the medical director of Camp Surefire, the only camp in the state for children with type 1 diabetes, which takes place every June. What looks like bedlam is, in fact, a well-oiled machine that he’s been refining since he started volunteering here nearly 20 years ago. With a seasoned staff of health care providers, professional chefs, and longtime volunteers, they’ve made meals a time for everyone to come together, talk about their day, and do math.

“We base everything around carb counting,” says program director Tommy Brewer, of Cranston, who has type 1 diabetes. “You get familiar with what a cup of pasta will cost you. It’s good practice for everyday life.”

On each table, sharps containers and bins of medications share space with pitchers of water and bug juice. Counselors and medical staff help the little ones check their blood sugar, calculate how many carbohydrates they will consume, and dose their insulin. Each camper gets a half-page sheet of the foods on offer that night, picks what and how much they want to eat, and tallies carbs. Only then can they fetch from the kitchen platters of chicken tenders, broccoli, and salad, which they dish out family style with the aid of measuring cups.

“We have certified dietitians and [URI] dietetic students that help pore over every single morsel that these kids will eat over the course of the week,” says Fox, a pediatric endocrinologist and clinical assistant professor of pediatrics at the Warren Alpert Medical School. “We know that our kids are getting good
food that’s safe.”

PARTY OF ONE

Carbohydrates are critical for a healthy diet. The body breaks them down into sugar, or glucose, which our cells then convert into energy. Usually insulin, a hormone secreted by the pancreas, enables that process, but it goes haywire in people with diabetes: the glucose stays in the blood, raising blood sugar levels, which over time can damage blood vessels and organs and cause serious health problems. That’s why anyone with diabetes has to carefully monitor the carbs they consume.

Type 1 diabetes is an autoimmune disease, brought on by genetic, environmental, or other, unknown factors, in which the immune system kills the cells that make insulin. While people with type 1 make dietary and other lifestyle changes to keep symptoms in check, they also must check their blood sugar and take insulin daily just to stay alive. If their blood sugar dips too low, say from taking too much insulin or skipping a meal, they might have seizures or lose consciousness.

All this can be isolating. Just 4.1 percent of Americans with diabetes have type 1; many kids are the only one in their school who has it. “It was strange being the only person in the nurse’s office during lunch, getting injections,” recalls Liam Scott, of East Greenwich, who was diagnosed when he was 7. “I always tried to hide my glucometer under the desk when I was testing.”

But the following summer he started coming to Camp Surefire. “Just to see everyone had their glucometers out on the table, and everyone was doing injections—it was a really good sense of community when I was in such need for that,” he says.

“When they’re here, everybody is the same,” Fox says. “From the very minute they show up, they feel like they’re part of something.” Most of the counselors and other leaders, like Brewer, have type 1 and were longtime campers themselves. “The counselors model good diabetes management,” Fox says. They normalize the blood testing and carb counting, and celebrate when children give themselves an insulin injection for the very first time. “We make a big deal out of that, actually,” he says.

Liam, now 16, is a leader-in-training—the first step to becoming a counselor—and a role model like the ones he had when he was a newbie. “I just feel responsible to give back what I was given,” he says.

PEACE OF MIND

Fox, whose father has type 1, began volunteering at the camp when he was a pediatric endocrinology fellow at Hasbro Children’s Hospital. He was the only doctor on staff, so after that first summer “they made me medical director for life,” he laughs. “I walked out of that very first camp, like, this is something that I absolutely love.”

His enthusiasm was infectious; soon the whole family was coming too. His wife, Ali, has been executive director since they formed the Camp Surefire Foundation, a nonprofit 501(c)(3), in 2007; their kids, Joe, 18, and Anna, 16, now have leadership roles. “It’s such an incredible part of our lives,” Greg Fox says. “We treat this as a family.”

Each year the camp adds more programming and diabetes education. What began as a weekend for about 20 campers grew to a full week, plus smaller events throughout the year. “It’s really evolving every year,” Ali Fox says. They recruit friends and other volunteers to play music, lead Zumba and yoga classes, teach cartooning and karate, “in addition to the regular arts and crafts and swimming and capture the flag and all those good things,” she says.

Camp Surefire is often the first—and only—sleepaway camp that its campers, ages 6 to 17, have attended. Type 1 diabetes requires 24/7 vigilance, something few parents will entrust to anyone else. Belle Channell, a camp counselor and senior at URI, says of her first summer at the camp, at age 9, “My mom was nervous. … She wanted to work in the kitchen to keep an eye on me.”

Even her husband, Stephen Scott, MD, an internist and a clinical assistant professor of medicine at the Warren Alpert Medical School, says he felt unprepared. In medical school, “you learn the nuts and bolts,” he says, “but the day-to-day minutiae, I had no clue.” He gets up every night, he says, “mostly catching blood sugar fluctuations before they become an issue.” Ramsey adds, “Steve hasn’t slept through the night since Liam was diagnosed.”

So it reassures parents that Greg Fox is a doctor and many of the staff work in health care or are certified diabetes educators. With 60 staff for 90 campers, there are plenty of adults ensuring each child is eating well and checking their blood sugar, getting the right dosage of insulin, and sleeping safely through the night. Counselors keep overnight vigils in shifts in each cabin, and Fox and other professionals make rounds into the wee hours.

Ali Fox, meanwhile, posts photos of happy, healthy campers on their Facebook page and fields calls from worried parents—but usually only first-timers. “It’s life-changing for parents,” she says of Camp Surefire. “Even just a date night for dinner, it’s hard. … There’s no day off. To at least have a few days where they know that their kids are safe and loved and in a good place is really huge. As a mom, that’s one of the things that I feel most passionate about.”

“It’s very common for folks to drop their kids off at Camp Surefire and go directly to an airport,” Greg Fox adds with a laugh. “Not on year one, but after that.”

Last summer after taking Liam to West Greenwich, Ramsey and Scott headed for the Shawangunk Mountains in New York to go climbing. “It’s a great camp,” Ramsey says. “When he goes away to camp, we go away by ourselves.”

FAMILY TIES

Volunteers are, pardon the pun, the lifeblood of Camp Surefire. “We couldn’t do what we do without them,” Ali Fox says. “We’re able to keep the costs low because everyone here is volunteering.” Nearly every staff member, from the Foxes to the health care workers to the counselors, is unpaid, and using precious vacation time to return each year to this place so dear to their hearts.

Nicholas Leso of North Kingstown, whose brother has type 1, became a counselor nine years ago, when he was a URI pharmacy student. “I thought I had a lot to share with the kids, but I learned shortly after I got here it was the other way around,” he says. Now a pharmacist at Walgreens, he volunteers as camp codirector with his wife, Jocelyn, a nurse at The Miriam Hospital. The couple met at Camp Surefire. “This is truly a family,” Leso says. “We’re a very tight-knit group.”

Over the years Greg Fox has watched over and cared for hundreds of campers, taught them to manage their condition, and seen them grow more confident in themselves and their abilities as they returned, year after year. “This is my baby,” he says. “It is an extended family.”

The Foxes stay in touch with former campers, attend their graduations and weddings. Ali Fox broadcasts their accomplishments on social media. “As the camp mom, I brag about them all the time,” she says. Since the Lesos had a baby last year, she jokes: “I guess I am moving toward camp grandmother status.”

They even developed the leader-in-training (LIT) program so the older kids could stay on. “They didn’t want to let us go,” says Troy Ribeiro of Malden, MA, who started coming to Camp Surefire 15 years ago and now codirects the LIT program.

Nor did campers and staff want to see each other only once a year. The camp began to organize other events: a reunion with families in the fall, a winter camp weekend for teens, an open house in the spring. Even fundraisers draw a crowd. “Whatever’s happening here, we’re here for,” Leso says.

Fundraising is crucial to Camp Surefire’s mission of giving every child the opportunity to experience sleepaway camp, learn to manage their type 1 diabetes, and gain independence. “We pride ourselves: we’ve never turned anybody away for finances,” Greg Fox says. About half the campers come for free, thanks to financial aid, and the camp gets donations of all the insulin needed during the week, he says. When Ali takes calls from parents worried about the cost, he adds, “Her first words are, ‘We work year-round doing fundraisers and writing grants. Let’s not talk about the money. Our top priority is to get your child to camp.’”

They make this effort because they’ve seen what a difference Camp Surefire makes in the lives of the kids who attend. “They know they’ve got each other,” Ali Fox says. “It’s the belonging and feeling connected and part of a family—that’s why what we do is important.” Dozens of former campers have pursued careers in health care, including nine (so far) who have gone to medical school, and many counselors and other volunteers have become certified diabetes educators.

The camp has even inspired the creation of other type 1 diabetes-focused organizations. After Susan Ramsey and Steve Scott saw how Camp Surefire changed Liam’s and their own lives, they founded Rock Type 1 to share their family’s passion for climbing with the community.

“We wanted to bring … both parents together, who are going through the same experiences, and also kids, to get that connection and support from each other,” Ramsey says. Just like at the camp, kids at Rock Type 1 events—which are held in climbing gyms throughout New England and outdoors, in the White Mountains—might test their blood sugar in public for the first time, and make their first friends who have the disease.

Cory Zapatka was diagnosed at age 15, and attended Camp Surefire for only four years. But those summers gave him one of his closest friends, as well as “the confidence to be open and proud to have a chronic illness,” he writes in an email.

Now 30 and a video director in New York, he says he’ll strike up conversations with strangers if he sees they have an insulin pump or other telltale signs of type 1. “Maybe they weren’t fortunate enough to have gone to diabetes camp or maybe they don’t have other diabetic friends,” he writes. “I hope my little gesture or conversation might be enough to let them know that they’re not alone.”